Monday, March 8, 2010

Asleep on the way to Cooks Children's Hospital

Some kids, for comfort, like to snuggle up to a nice cozy blanket. Some kids, for self soothing, like to suck on their thumbs and maybe melodically hum to themselves. And some kids... my kid... likes to throw his head from side to side, seizure style, and scare the crap out of his parents.

I've been thinking for days, how I could transfer my feelings into words. Every time I sit down to do it, I become instantly exhausted. All of my fears and experiences from our trip to Dallas are so overpowering in comparison to our usual day to day, that I've really just left it alone, allowing it time to sink in. I was so overwhelmed by everything in the beginning, that I didn't know where to start. I didn't know what to think, I didn't know how I should respond, I didn't know how to fix it- ...I shut it out. How else can we get on with our normal every day lives and duties, if we lose our focus? I'm finally to a point of acceptance, a point of peace, where its become nothing more than what it is. Does that make sense? Its nothing that we can't handle, its nothing that I can fix, its nothing that is going to make a difference in the way that I love my son. It is what it is.

The play room at the Ronald McDonald house

Last Tuesday, we loaded the kids up in our new minivan (oh, you just wait, the big introduction is soon to come), and we hit the road. We had snagged a last minute appointment thanks to a very helpful staff member, and off we went. We were also lucky enough to get a room at the Ronald McDonald house, a beautiful place that was so far beyond our expectations. So much so, that I didn't allow myself to take any pictures while we were there, other than in the play room. It wasn't my house to photograph. That might sound silly, but considering all of the emotions that echoed between the walls, I just couldn't remove my lens cap.

Tuesday afternoon, we walked from the Ronald McDonald house over to the hospital. Anxiety levels were at an all time silent high. As we sat in the much larger than I imagined waiting room at the neurology department, reality hit. A girl to the left, shouting loudly- every couple of seconds, because of her tourret's. A little boy to the right, twitching every couple of minutes- but not in a way that seemed to disturb him. It didn't seem right. We didn't quite fit in, we felt out of place. As we waited, we read books and sang songs to avoid the awkwardness of our new surroundings. Charlie was tired and rubbing his eyes. He had a seizure (which we're about to find out isn't a seizure at all), right there just feet away from where the doctor would be. Maybe he would do it again once we got into his office?

I explained in details, Charlie's symptoms. I showed the Doctor the videos that I had made on my camera. I made eye contact as much as possible, hoping that he'd see my over the top desperation for answers. And then, after the exam, I was thrown completely off course...

"Your son isn't having seizures".

What? No... but, didn't you see the videos? Didn't you hear anything that I just told you?

"Your son is having stereotopies".

Seizures. My son is having seizures. Not stereowhatevers. I watch him have them every day, several times a day. Look again. Check, again. Run tests, observe him for longer than ten minutes, help us- I pleaded with him in my head. Out loud though, all I could say was "...are you sure?". The doctor laughed a little, having probably heard that question come from every mother of every baby and child he had ever seen. He went on to explain how he was an epileptologist- epilepsy and seizures were his life. Christopher and I had talked before we even left Abilene, about how we were going to see a specialist, and he would probably know instantly what was wrong with Charlie. We agreed that we'd listen to the doctor, while at the same time, not allow anybody to jump to conclusions. Well when he told me that my son wasn't having seizures, all of that went out the window, and I started fighting. Not fighting with the doctor exactly, but more like, fighting for further testing. Pushing for evidence. Without having realized it though, I had apparently diagnosed Charlie before we even went there. I wasn't letting it in.

I was sure that my son had epilepsy. I had seen it.

We left the office a few minutes later with orders for a 23 hour in-patient EEG. We'd come back in a week or two, admit Charlie to the hospital, and then we'd know for sure.

The tension had built up behind my eyes, and by the time we made it back to the parking lot at the Ronald McDonald house, I was burying my face in my hands, tears flowing full force. Christopher and I were arguing- "why didn't you back me up?", I asked him. "You didn't say a single word, you just sat there", I blubbered, sitting in the back of our van while the babies sang out complaints of hunger.

Later that night as we settled down after our busy day- after hours of traveling, and play rooms, and attempting to eat an allergy free meal in a cafeteria so different from our kitchen back home- I remembered what Christopher and I had talked about before we left Abilene.

We said we'd listen to the doctor.

I tried to clear my mind. Charlie was crawling around the room, opening and closing desk drawers, occasionally slamming them on his finger and distracting himself with the pain. Eleanore was watching Piglets Big Movie on the portable DVD player that we had borrowed from our neighbors across the street. Christopher was... somewhere (its not my job to keep tabs on him the way I have to with the babies, so he sometimes slips my mind). I layed on the broken sleep number bed, netbook in lap, eyes focusing on the ceiling, thinking about every word that had come out of the doctors mouth. I replayed the visit over and over again in my exhausted memory. "Your son isn't having seizures", he had said. He had followed that statement with facts. Facts that I had ignored at the time, but was finally trying to wrap my brain around.

I thought about it all night. I layed awake, listening to the sounds of helicopters landing at the hospital, shivering due to the lack of heat in the room, flipping from side to side trying to get comfortable without my familiar pregnancy nest. It must have been somewhere around two in the morning, when I decided that ...the doctor was right. Everything he had said slowly came together, much like a puzzle. Every little piece of information connecting with a piece of observation, and finally I was able to see the big picture. The doctor, was right.

We called the next morning, and cancelled the 23 hour EEG.

Our son has something called Stereotypic Movement Disorder.

He rolls his head from side to side, the same way a child with Autism does, as a way of comforting himself. I've asked myself why, over and over again. Why would he do this? Am I not enough? Do I not hold him when he needs to be held? Do I not respond to his cries fast enough? ...it has nothing to do with that. It took me days to come to the conclusion that this is not my fault. Some kids bang their heads on a wall, some kids bite themselves, but our kid, rolls his head from side to side, sometimes so violently that it looks like hes having a seizure. And its not our fault. Its just something he does. Its something he might always do. He might grow out of it, he might not. It might be associated with a more serious condition, it might not. It is what it is.

Eleanore, our oldest, also has a movement disorder. Rhythmic Movement Disorder. Just as shes falling asleep, or if her slumber is disturbed, she gets on her hands and knees, and rocks her entire body. Sometimes, depending on her surroundings, she'll rock for hours. When the baby's cries wake her up in the middle of the night, she starts rocking. When shes finally finished talking to her imaginary friends after the lights have been turned out, she gets on all fours, and rocks herself.

Both of our kids have movement disorders? Different movement disorders. I want to ask myself why, and I want to find an answer. But as soon as I start to let my mind wander there, the exhaustion tackles me from behind, I remind myself that it is what it is, and I move on with my life. I don't care, that they have movement disorders, and neither should they.

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comments:

oh, i'm so relieved it's not actually seisures. i was so worried for you and him! :O*hugs*

i know a little boy who had that movement disorder, actually. he moved his head back and forth like you describe when he was happy. thankfully, he grew out of it, and he's been tested for autism spectrum disorders, and doesn't have any.

It's so hard to except other explanations once we've made up our minds about something...especially when it comes to our kids. I know I get so focused on one aspect of something that I forget to open up to other possibilities and once they're presented it takes time to assimilate.

I'm so glad Charlie is healthy. You can't control this disorder any more than you can control his eye color- it all seems to be locked somewhere in our genetic make-up. He looks like a pretty happy kiddo and that IS thanks to you.

What a beautifully honest post Tia. I'm thankful that Charlie isn't having seizures... but it must be so so tough to deal with this equally frightening situation. Thankfully you have a loving family unit... the four (err five) of you will get through this... especially little Charlie. I love that you say "it is what it is" ... its one of my many phrases that I love to use, because many things/situations in life you just can't control... and as hard as it is, you have to just deal with it because... "it is what it is!"

I guess both my girls have forms of Stereotypic Movement Disorder because Sophia sucks her thumb and twirls/sniffs her hair constantly... and little Charlotte likes to bang her head on the floor. My nephew used to bang his head on tables and floors, and a friend of mine has a little boy that used to scratch himself until he actually bled... but both boys have outgrown it now... so there is surely lots and lots of hope for Charlie to outgrow it too.

Stay strong... love your family...be the best mom you can... and give those babies all you can and you will all come out of this fine.

I'm so glad that Charlie isn't having seizures. I just want you to know that I admire your strength and courage, Tia. You are a very strong woman and I think it is amazing how you deal with a lot of things that come your way.

Oh Tia, I have been thinking about you and thinking about you and thinking about you and all of your family. I am so glad that little man is okay. I am sure that what Charlie is experiencing is scary, but I am so glad that he is not having actual seizures. i am confused by all of this and i am going to follow the link that you provided.

all this being said, i really admire you for sharing all of this with us because it is difficult when our families and children go through things that are bigger than us. you are a strong, wonderful mama. charlie is going to be okay. charlie is lucky to have you and chris.

WOW! It's good to hear that he is okay, I can only imagine how stressful it has been for you and your husband both. You are an amazing mother and a strong soul, I hope having the answers brings you some peace.

Thanks for writing Tia! Really good to hear it's not seizures. I had never heard of the stereotypic movement disorder but after reading about it, I may have some slight experience. But I am not sure b/c no one in my fam was ever diagnosed with it, but maybe had some symptoms. I bite my nails and one site I saw(wiki) said that even can be a slight form of smd, I had no idea!

I will pray for Charlie, you and your family as you encounter this together. You are a great family. :)

I'm beyond overjoyed at all of this! You, my dear, are an amazing mother and woman and an inspiration. Thank you for being so brave and letting us follow you in your journey to discover what this was all about. And I agree with you...let them both rock, bite, bang, whatever they need to do! As long as they are healthy...it's all good!

Tia...Tia, Tia, Tia. I am SO glad you finally have peace with this, and know what's actually going on. As mentally exhausting as the whole situation is, what a relief it must be to know that things are going to be okay. I know a LOT about the Ronald McDonald house. I've had to stay at them many times due to my brother's health, and mine growing up. You are so right about the emotions that are in that house. It's overwhelming. I never really knew about the emotions because I was young, and all I cared about was meeting other sick kids, playing in the play room and on the playground, and wandering the giant house. Now that I'm old enough to understand, it makes sense. I remember my parents talking with another set of parents one night in the kitchen for hours. I had no idea what they were talking about, but they all had tears in their eyes and seemed to be comforting each other.

I know we may not be close and I may not know exactly what it is you're going through, but please know that I really am an email away if you need to talk, okay?

Wow what an emotonal rollercoaster.I have the same reaction to doctors - I immediately question them, because out of experience I've found they don't have the answers and they don't always have the best solution for me. I'm so proud of you for realizing the difference and coming to grips with this. There may be more acceptance to come, but for now, you're doing AMAZING.

Glad to hear your little boy is okay. I have been thinking about you guys and hoping it wouldn't turn out to be to serious or scary a diagnosis. You have a good head on your shoulders and a loving heart!!! He will be just fine with a momma like you!

I'm so glad you have an answer for Charlie even if it is not what you expected. "It is what it is" is such an excellent motto for life and I try to adopt it myself although it's not always easy to accept. It sounds like you're doing really well with the diagnosis though. Big hugs & love to you & your family. xo.

First, can I just say how completely impressed I am by your honesty? I have to admit that I probaby would have been defensive about the fact that I had "diagnosed" him myself (which I totally would have done, while trying to find answers!). And I wouldn't have wanted to be honest about it. You are my inspiration, Tia. No joke.

I am convinced that every child has their 'thing'. Sometimes they outgrow it, sometimes they don't. My daughter has a bladder disorder and has bladder infections all the time... she has add and ocd tendancies at the same time. Even the school social worker doesn't 'get' her, lol. But she's perfect. :) My son has a lazy eye and also has ocd tendancies. He's perfect too. :) And I know you feel the same way about Charlie and Elie. You are a great mom, Tia! :)

I am so glad you were able to get in to see the specialist so soon...and that you found a place of comfort in The Ronald McDonald House (I know others who have too) and that the big scary diagnosis that could have been has been counted out.

Amelia used to do what I call "head bumping" on her pillow when she was a little younger than Charlie. Eventually, she gave it up along with the thumb sucking and learned to comfort herself by playing with her belly button! By three she gave that up too and now she's content with a dolly to cuddle with at bed time. I have a friend, who still does the head rocking and bumping when she's particularly wound at the end of the day and tries to go to sleep. It has no impact on her at all...it's just somethings she does and no one would ever know unless you were bunking with her!

It really hard to get a handle of sometimes, but like you said, sometimes you do nothing...and a LOT of the time it's not your fault or anything you can fix :)

Glad to hear Charlie isn't having epileptic seizures!!! Glad you are able to move forward with everything by accepting what is and isn't.

On a personal note, I use to rock myself to sleep until I was about seven or eight years old (not sure if it was a SMD). Only when I am extremely exhausted to I rock my foot. Not sure if this helps or not, my point is, there is always room for hope.

what a big relief! so glad you're getting answers and that you received such a happy surprise! My daughters issue at that age was going rigid- stiff like a stick. It was so embarassing, because to soothe herself she'd go stiff and/or grind into whereever she was sitting. It used to make me nuts...just one of those odd things you experience once you have children! so glad for you and your family, xoxo

Wow, I don't even know what to say that hasn't been said already in your comments- what an amazing support network you have here!! I was waiting and waiting to hear about Charlie and let out a big sigh of relief at the end of it all, I'm so happy for you guys that they weren't seizures or epilepsy! I hope you all continue to adjust and revel in the love of a wonderful family~

Thank you for sharing your experience and i am so happy both of your children are healthy! This is a great read and hopefully those who have children who do the same things as your children get a chance to read this post. It's an eye opener and this just shows you all children are so different. The main thing is they are healthy and now you can stress less about it, knowing that. :D